Just Like Me!: A Book About A Girl with a Rare Disease - Couverture souple

Rugari, Anne

Couverture souple

ISBN 10 : 1945091932 ISBN 13 : 9781945091933

Editeur : Braughler Books, LLC, 2018

Synopsis

Just Like Me! was written to help all children understand that boys and girls with any rare disease are just like them. They may look or act different, but inside they are just kids, like them. Hopefully the book will help encourage understanding of all children who are differently-abled. Such an important life lesson!

The little girl in this book was inspired by Gina Rugari. Gina was diagnosed with Krabbe disease, a leukodystrophy, just weeks after she was born. Her journey to high school was filled with joy, laughter, tears, struggles and so many accomplishments. She loved crazy painted finger nails, Girl Scouts, and watching American Idol. She made art, played soccer, and was great on the computer. Even though she continued to lose muscle control and finger dexterity during her life she became a wonderful teacher. She was a lesson in love, bravery, and persistence for so many classmates, teammates, friends and adults.

Gina's smile could light up a room. Please use the story in this book to give your smile away to someone who may be different in some way, but is Just Like You!

A propos du livre

À propos de l'auteur

While raising her healthy first son, Philip, Anne Rugari lost a second son, Nick, to Krabbe disease in 1987. He was only a year old when he passed away . Anne knew, as she expected her third child in 1999, that the baby should be tested at birth for Krabbe disease, a genetic disorder. Baby Gina tested positive and received an umbilical cord blood transplant at just three weeks of age to give her the missing enzyme she needed to thrive. Gina Rugari was a pioneer in the Krabbe world of medicine and research and considered a miracle child. She lived to the age of fifteen, 14 years longer than her brother, Nick. During her lifetime, she couldn't walk and used a computer to talk, however, Gina was cognitively appropriate at every age. Gina attended school through her freshman year of high school, participated in her community, enjoyed swimming, travelled all over the country and was proud to be a Girl Scout for 10 years of her life. As her disease progressed to her peripheral nervous system, Gina lost her battle with Krabbe in the summer of 2015. From Anne's experiences with Krabbe disease and the loss of two of her three children she has used her talents to create awareness and advocacy about this rare disease. Anne founded Partners For Krabbe Research in 2012, has written and published her first children's book, co-founded a second non-profit for Krabbe disease in 2017, and is currently writing a more comprehensive book about her life with Gina and Nick. Anne supports research by funding and working with scientists, researchers and clinicians all in the hope of changing the outcome of people and families affected by this rare disease.

Détails de l'édition

• Éditeur: Braughler Books, LLC
• Date d'édition: 2018
• Langue: anglais
• ISBN 10: 1945091932
• ISBN 13: 9781945091933
• Reliure: Broché
• Nombre de pages: 22
• Coordonnées du fabricant: non disponible
• Personne responsable: non disponible